With a disability, the ACA has given me hope.

I had my first seizure in my early teens. My brother, ill from birth on, was finally getting better and boom I was diagnosed with epilepsy. My dad, self-employed, was doing pretty well at the time and our family of four had good insurance coverage with United for about $800 a month at the time.

 

Florida has a juvenile truancy law and I went from being an honor 4.0 average student to literally being dropped out of school as a result of the seizures. This truancy law and many seizures robbed me of traditional teen experiences like prom, learning to drive and the graduation walk. My diploma was mailed.

 

It was a period in which we had good insurance but times were hard and then my parents got divorced. When I turned 18 my dad couldn’t talk for me anymore and I had to talk for myself which became a problem. With my pre-existing condition and being a woman I couldn’t find health insurance on my own that was anywhere near affordable and would cover my needs. My dad had fallen on hard times and the three of us were now covered in a high-risk pool. At the time I had so many seizures and severe memory gaps but I remember the day the Affordable Care Act passed and I felt my life had been saved. My family didn’t have to worry about pre-existing conditions and lifetime limits any more. Then Governor Rick Scott sued the federal government over the Medicaid expansion and the Supreme Court ruled the states didn’t have to accept the program written into the ACA for people like myself who make less than 100% of the federal poverty level.

 

My dad fell ill and couldn’t afford the high risk pool health insurance premiums. He stopped paying for himself, but kept paying for my brother and myself. He didn’t want us to have a gap in coverage.

 

These high risk insurance policies only covered four primary care visits a year, had virtually no prescription coverage and a $200,000 deductible, so I had to forego insurance. I couldn’t see a neurologist anyway. My dad hadn’t had insurance coverage for quite some time now and he died of a heart attack and lung issues two weeks before he became Medicare eligible.

 

I have many health issues, epilepsy, depression, joint issues and I am at high risk of cervical cancer. I currently have no health coverage at all except for my epilepsy through the Epilepsy Foundation. I am a single able body and I want to work, I want a job but I am not hired because of my health issues. I am sick, but I cannot see a doctor so I cannot get better. I make between $5,000 and $8,000 a year and am working hard to get my Bachelor’s degree. I am determined to have a better paying job by 2019 so I will be able to get coverage. But if the Republicans get their way and pre-existing conditions are not covered, my dad died for nothing. The ACA has given me hope and hope is definitely something for a person with disabilities.

 

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